Endometriosis Foundation of America 2014
Lunch and Keynote Address
- Byllye Avery
Moderator: An activist in women’s health care spans more than three decades and her work over these years has sparked a movement of women of color to become involved in defining and working on health issues important to their constituencies. In 1983 she founded the Black Women’s Health Imperative committed to defining, promoting and protecting the physical, mental and emotional wellbeing of black women and their families. The Avery Institute for Social Change organized in 2002 has focused its work on health care reform. The winner of many awards and honors including the MacArthur Foundation Fellowship for social contribution a/k/a the MacArthur Genius Award, Byllye has served populations through her achievements in special education, grassroots crusading and pioneering work within the African-American community. She has served as a visiting fellow at the Harvard School of Public Health and holds honorary degrees from Gettysburg College, Bowdoin, Bates and Russell Sage among others.
Byllye’s contributions have forever changed the landscape of women’s health care and given all women a better opportunity for a healthy future. Byllye you are truly an American hero, I am so thrilled to have you here. We should all stand up and applaud this woman before she says a word!
Byllye Avery: Good afternoon everyone, good afternoon everyone. I know you are all eating but you can take a moment here. How are you all doing?
Well, thank you so much for the invitation. I found this to be quite an interesting topic to me. I will tell you why in a minute but I just want to come out and say that in all of the years I have been doing this work, since 1973, I have not heard very many women talk about endometriosis. We have talked about almost everything. There is a vast conspiracy of silence going on. And probably one of your biggest jobs is to figure out how do we break that?
But first I want to start off just a little bit to tell you about me. I got my period when I was 12 years old and right off the bat I had cramps! That was not expected, as a matter of fact the period was not expected either. So when I said to my mom and all of the people what to do they gave me Midol and they told me that I am probably going to have cramps until I have a baby. That did not sound very promising. Because when I got my period my mother told me, she said, “Umhmm is here. If you get pregnant I’ll kill you and you’re going to Talledega College”. So this sounded like the baby thing was a long ways away. But I suffered every month until I had a child at the age of 24. Now I know that is nothing that is just a drop in the bucket to what women who have this disease have. So I am not about saying that I can feel your pain but I felt enough pain to know that what you are suffering with we have got to get the word out. You do not need to suffer in silence as you have been doing.
I am also amazed I cannot believe that there is a million women march in Washington, DC next Saturday. I did not know anything about that, how can that be? I just do not understand it and I am on the phone with folks all the time. So there are some things that we have got to get straight. What I want to say to you is that you have got all the ingredients here. You have just got to kick it up a notch. You have got to first understand that you cannot be nice. You do not get anything being nice, not in this culture where we live now. Not where we live now.
A little bit about my background I have been working in reproductive health, we founded an abortion clinic and a birthing center. I have been involved in the women’s health movement since the early 1970s, which means I work closely with my white sisters and then went on to start working with my black sisters. I come with both of how we work together around our differences. How we work together around our ethnicity and why that is important.
I am supposed to talk a little bit about the Affordable Care Act the controversies; I am going to spend two seconds on that because that is not what I want to spend my time on. I want to spend my time on the opportunities that you have. One of the things that the Affordable Care Act has made us all think about is access to health care our human right? Every other country you go to in the world people talk about health and human rights. What is wrong with us? Do we really believe that all of us deserve to have access to health care? When you lose your health you pretty much have lost everything. We do not really own a lot our health is one of the things that we own.
There is a lot of controversy around reproductive health, justice, which is not about reproduction, not health, not justice. It is a political pawn. When will our insurance companies pay for abortions? Do women who have abortions have access to care? Can they be covered? Who is paying for it? Is it the government paying for it? Separating the money, da, da, da, da, da. It goes on. Should health insurance be tied to your job? What does it have to do with your job? If it is tied to your job your boss gets to pick what policy you have, what company you have, what coverage you have. We have to question that. It also made us aware of how little we know about health insurance literacy. How many of us in here know how much it costs to have a baby? How many of us know how much money gets paid to the doctors, the hospital, the facilities get paid for our pap smear? We do not know those things. All that information is kept from us. Do we even understand how to use insurance? We talked to some women and they said have not had insurance, “Well, we thought it was kind of like car insurance. You don’t use it unless you have an accident”. Well, there is a different way to use it. Health insurance literacy is a big issue. Then, who determines whether poor people or low resource people should get care? We are talking about Medicaid expansion. All of the states that have come through with the Affordable Care Act that are refusing to expand Medicare and as you will suspect it is the states with the worst statistics like Mississippi, Alabama, etc. etc. You get my drift.
It demonstrates how the ACA is used as a political football that creates a lot of misinformation and is not about improving health care and better outcomes for better informed patients or reducing health care costs. It is all about politics. That is it for the controversy.
Now let us turn to the opportunities. The opportunities to provide health care coverage for everybody could reduce morbidity and mortality rates through prevention and screening, could educate the public on how to be better users of care, increase active participation in folks staying healthy. We will learn how insurance works and how to use it properly. We would establish new health habits regarding prevention and screening, have a healthy lifestyle and that is so important because we learn health through our families.
That was one of the biggest lessons I learned with the Black Women’s Health Project which was the name before the Imperative was that the first conference we did in 1983 we had 2000 women come and there were several sets of families where there were three and four generations. I had never been to a conference where people brought their mothers, they brought their sisters, they brought their daughters, they brought their whole families. So our health is about the health of our families.
Now, what we want to talk about is what opportunity does this present for endometriosis? While we have the attention this is a time for you to seize the moment. From the way I understand it there are millions of women out there who have had endometriosis and who have endometriosis. You have a waiting army. What you have to do is connect to them and get their move to activism. Nothing is going to happen by sitting in rooms and talking. Nothing is going to happen until people hit the streets. And now we have all this social media stuff, some I understand, some I do not, you have Facebook, Twitter, you have all kinds of everything. You have got all of that. But what you also need to have is the ability to touch their souls.
Let us look at some other movements that have happened. The civil rights movement; let us start with that movement. What are the lessons we can learn? The civil rights movement built a diverse movement that addressed the heart and the soul of the issue. It mobilized the affected population. And believe me black folks were scared to confront white people. Remember we had been under the hammer for so many years. It took a lot of courage to be able to stand up. But the civil rights movement was able to do that.
I remember I was at Talledega College when Dr. King came, he came to the college twice while I was there. The first time he told us that we had to learn how to forgive all white people for the bad things that had happened to us. He said there were three types of love; erotic, platonic and redemptive. The most important was redemptive and that we had to forgive. And I remember one student saying, “What are you saying Dr. King? We can’t hold them accountable?” He said forgiveness that if you do not forgive them you will stay stuck right where they are and through non-violence we will move them. And we did. We also had a perspective that was easily and clearly articulated – we knew what we wanted – we knew where we wanted to be. He was my graduation speaker and I remember him saying to us, “You no longer have the luxury to sit on the sidelines. You have to get involved”. I say to you you have no choice but to get involved. You cannot sit on the sidelines of this issue any longer. You have got to move it.
Then I got involved in the women’s health movement. One of the things we did was challenge the status quo of the medical community. We had to go up against the doctors. It is really interesting to hear you all talk about informed consent, access to records, all of this. We fought hard and we tried to tell you that the more we know about our condition the better uses of care we will take better care of ourselves! Teach it to us! We can learn it! Do not be threatened by us! And now it is so wonderful. You can just go on Google and come in with stuff. One doctor, somebody said this morning they have already been on Google so they already know everything. So we became very knowledgeable and we challenged the M deity. We did not want you to come into the room to examine us when have our clothes off and you have yours on. We did not want the cold stirrups anymore. We want you to understand and be there with us and you all are working with women.
One of the things you have to understand is the way we think and feel and what works for us in order for you to be there with us in a way to help us overcome whatever we have to overcome. I am talking about how you all are going to end endometriosis. As that slide said this morning, I can remember it, but it is the end of the beginning. And you are ready to go to the next stage.
We also access the power of storytelling. There is nothing more effective than having women tell their stories of this disease. Since I have been here two people have told me the stories of their disease. I had no idea until two or three months ago what women go through with endometriosis because you all are not talking. So you have got to move past the shame, the guilt, the whatever it is that is blocking so that you can get these stories out into the world because that is the only way we are going to understand it. You have to do that.
One of the ways we did it in the women’s health movement is we had consciousness raising groups. This is when I was doing this with the white women. We would sit and we talked about everything. We did not talk about endometriosis but we talked about everything, our relationships with our mothers, our fathers, our health and that is how the women’s health movement got the basis of what we needed to do to challenge the medical community to change, to change, to make health more of a humanistic thing. Women did it with child birth. We no longer wanted to – birth is a humanistic affair. We did not want unfeeling births. We did not want to be in ugly rooms. We wanted to have them painted. We wanted rocking chairs when we had our babies. We wanted to breast feed. We wanted all of these things and you listened and now we are all getting better care.
We challenged sexism in all aspects of care, especially in research. We found out there were no women done in the studies. We had to say women are not little men, you know, we are women. Our bodies work differently. You cannot say what happened with a man is going to happen with a woman. Now we know not only that but we have to even go further that it is not just enough to do male/female. I will talk more about that in a minute.
While I am at it if we are talking about sexuality I do not know whether you have run into this but with all of the transsexuals going on you are going to come across somebody who is female going to male who you might already have who might have endometriosis. There is going to be another frontier that you have to talk about. How do we treat this patient? We are in a changing world and some of it is moving really fast even more for me. But it is moving and the thing of it is it is not going to stay the same.
We look at the AIDS movement. One of the main things the AIDS movement did was challenge the pharmaceutical drug industry and the FDA on trials. So, no longer do we have the old, archaic laws. It also created an awareness of the disease moving past shame and guilt, moving past silence with the whole thing. Remember, silence equals death? You had to speak out and you had to speak up. It made it okay to talk about AIDS publically, which is not endometriosis and while it is devastating they are saying that women are not dying from it, you kind of wish you were dead I am pretty sure many times with it. But with AIDS people were dying. You have got to talk about it. You have got to talk about it. They got the ball rolling so there was money for research and grants.
Now what I learned is that when the breast cancer movement was getting started they went and sat down with the people who had the AIDS movement and talked to them, “How did you do it? What did you do? What can we do?” they sat at their feet, they learned their lessons and they plotted their course. So the breast cancer movement I mean they have educated people around breast cancer. I was thinking March is endometriosis month, hardly anybody knows. Honey, what is October? October is everything, pink everything. They have got everybody wearing pink. Pink on gas trucks, pink on football players’ feet, even my grandson wears all pink in his Little League baseball. They have pinkified the world and sometimes we have to question it. We have to question it. I am not saying that you need to go all out like that because some of that is good and some of that is not good. But the point I am making there is public awareness! And that is one thing we really have to work on public awareness.
They also have figured out how to attract all segments of society that your power is in diversity. There are not nearly enough black and brown people in this room. I know there are a lot of doctors who are black and brown who treat this disease. I know there are tons of people who have the disease. You have got to reach out to all of the diversity. You have got to have everybody in the room and at the table so you can get a full picture of what you are dealing with. You cannot just get a partial picture you have to get a full picture and then you get the gifts of what all these people bring, that all these people bring.
Another thing that breast cancer did that is very smart they have increased the funds of breast cancer research. In addition to the money that goes to NCI the Department of Defense breast cancer research program gets $2 hundred million for research. Part of it is for idea grants totally off the – you know you do not have to have any data or anything. They want new ideas. They fund that, they are the largest funder of breast cancer research. They tied it into the Department of Defense.
You all have got to go up there, I do not know what you are going to do after the march but then Monday people need to be going up to the hill to talk to these legislators. I do not know if you are going to get a whole lot from these people up there now but if you can get in the practice and they need to get into practice of seeing you coming there and they need to know that you go there every year but you have got to go and demand money. It takes money to do things. It takes money. Breast cancer has got big money. They have got big money so you cannot get around not having money.
The other thing is the breast cancer movement challenged the gold standard of breast cancer treatment. What Susan Love says that we challenged the slash and burn method for treatment. And in the end all of it came out. You have got a charismatic leader here. You have got wonderful sister from overseas here. You have got the ingredients. You have got an ED here who knows all of the movements, who is ready to move on it and you have all got to get together and figure out how you are going to raise money. How you are going to have people organized down their color lines. That is one of the important lessons I learned from the Black Women’s Health Project. When we started our work people told me black women are not interested in their health. They are not coming to your conference. We had over 2000 people come from all over the country. They came on buses, they drove, they did whatever they needed to do to be there. When you tack on the ethnic part of it the name like when we were working I remember Luce…would come out and hang with us and go everywhere. I said, “Luce you’ve got to go organize your own sisters. You can’t just come here with us”. She organized the Latina Women’s Health Project. Mary Chung, she organized our Asian American group. Sharon…she organized the Native American, those were back in the early and late 1980s and early 1990s.
Some of those groups are still going on but others have grown from them. Somehow, when we come together down our color line and I am not just saying all middle class black women, I am saying you have got to get the low income sisters because this is an equal opportunity disease. You have got women out there who live in the housing projects who are lower resource who own it. When you come together as a group of women in your own color do not think of it as segregation think of it as comfort. I need to come and hear that other people are experiencing what I am experiencing. I need to come where I am comfortable to speak whatever I have to speak about what is happening to me. I need to come so we can get our agenda together. Like what Native American women think is the most important number one health issue is not what black women think. What Latinas think is not what we think. They are all health but even within endometriosis you will find that there will be differences among ethnic groups. Then when you come for your conferences that is when we all come together and then you find out what we have learned from each other. And you find out how do women deal with this at all different levels.
And the last thing I want to say because, oh my goodness, I have a few more minutes. One of the last things I want to say is that I cannot emphasize how important it is to have support groups. These are small groups of women who meet in each other’s homes at least once a month to talk about what has been hard for you. What has been good and what do you absolutely love about yourself. It might be that women are going through surgery, it might be that women are making these rounds to the seven or eight or nine doctors that they have to go through before they can get a diagnosis. It might be that they need some help. That they might need to have their hands held. One of the things they do in breast cancer is when you hear about breast cancer one of the first things they do is refer you to a support group. That is because that is important. The living room, the kitchens are the places where you want to organize. There is no reason for you not to have a 1,000 groups going on across the country. I am not saying that you need to start that tomorrow with 1,000; we will start that tomorrow with 100. There are women who will do it.
Also the inter-generational effect – the grandmothers, the mothers, the daughters – they all need to be educated within the family, to get support within the family. These things are crucial. I say that to you because you are people with a lot of power. You have got a lot of power. You have got more power than most people in the United States. And you have power because you have access, you have knowledge, you have caring and you have access to money. And you have access to money that you did not even think that you had that you do not even know that you have. And while foundations and all might not be interested in this issue you all have got to make them interested in it. You have got to get with the media. You have got to get corporations to give you money. You see the powerful women who work in these companies who are the CEOs who are in charge of the money. They are your patients. They are the ones that can put your ribbon on whatever product they have or give you money. Do you all understand what I am saying? You have resources, you are not pitiful you have resources. And you want to get this issue taken care of. You want to end endometriosis. Now that is not going to happen in the next five or ten minutes it is going to happen long term. But you are capable of planning and making it happen. You can do it. I know you can, you absolutely can do it.
Your needs list – Dr. Linda gave it to you this morning. She told you everything that needs to be done. You have the list you know where you need to go. She even brought the money thing up. You have got to do it. But let me tell you there is nothing more powerful than pulling your army together and taking them to Washington, DC and having them march in the halls of Congress and make it happen.
When we were studying health disparities we had Centers of Excellence. We had about four or five Centers of Excellence. When you get them you need to go and demand that we get Centers of Excellence that will study this disease and then you have to keep your foot you know where to keep the funding there so that it all happens. I know you can do it. Ten years from now you will say, “Oh remember, remember when that woman came from Massachusetts and was talking all that about we could do this? Look at us now”. You have the power to do it. If it is to be it is up to you.
Endometriosis Foundation of America 2014